Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.

I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie

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@vonbaron36

I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs every morning for breakfast. Its been four years now and no cancer. As a bonus I also have no arthritis problems and I am 82 years old. Still have my fingers crossed. Good luck.

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Do you take curcumin 1000mg or turmeric/curcumin 1000mg
Did you check with doc first?
Thanks

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@stephaniet

Good question! I am just recently diagnosed, scheduledfor PET scan next week to help determine next step. If my choices are watch & wait vs. treatment, I think I would push for treatment (because I have a retroperitoneal mass that has taken out one kidney and I would prefer to stop it before it affects anything else — there’s a lot of important “stuff” in that area!) what would be the advantage to watch and wait (other than avoiding the ordeal of treatment)?

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I agree with what you're essentially saying, that Watching and Waiting is not appropriate when there is an obvious cancerous mass that could spread. That's how it was for me, and I was wilIing to go through surgery and chemo to get rid of it. I bet they will recommend removing it for you if it is operable. Good luck to you.

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@chuck218

Do you take curcumin 1000mg or turmeric/curcumin 1000mg
Did you check with doc first?
Thanks

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I take 1000 mg of Drs. Best brand of curcumin because It has one of the largest concentrations of curcuminoids, 95%curcuminoids. Products labeled turmeric/curcumin usually don't contain muck curcumin, which is want you want.. I checked with a couple of Drs. and they both said it would be O K, Depending on your medications it would be wise to check with your Drs. also. They would not recommend taking curcumin if you are on blood thinners, like those containing Warfarin.

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Thank you for your information. It is helpful

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@ginpene05

I agree with what you're essentially saying, that Watching and Waiting is not appropriate when there is an obvious cancerous mass that could spread. That's how it was for me, and I was wilIing to go through surgery and chemo to get rid of it. I bet they will recommend removing it for you if it is operable. Good luck to you.

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Thanks. All I know so far is the mass is located where it can’t be removed surgically or radiated...so obviously hoping it can be defeated using immunotherapy/chemo. Stay tuned!

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@chuck218 I am now 3 yrs on a watch and wait routine. Through the course of these three years I have had all kinds of feelings and thoughts. And to make it even worse I was also diagnosed at the same time colon cancer. How do you survive double trouble, 2 cancers?

The word cancer itself is frightening.. I have always associated that when you get cancer your done with life. It is very difficult to cure this disease. Most people do not make it. That was what I believed or knew. Especially sitting on the internet reading. The information is outdated and god only knows what truth is. I had to stop reading everything I came across.

The day I was diagnosed with cancer time stopped. I put several things on hold to see how was this all going to pan out. Everyone I knew personally with cancer had passed away. I own my own business. I made a few calls in tears to see what it will take to close my company? I find it difficult to plan too far out. However I try and remind myself I feel fine. So Plan that trip..

I started doing things that I always dreamed of doing. Some crazy things and some not so crazy. I had to pull myself up from that couch and move. Go out and do things. Get off of the internet and only pop on once in while reading about the disease.

I can tell you what I have learned in three years of watch and wait. It means we are not dying anytime too soon. It just like having any other disease You now have to have a team of Dr's who check on you every few months. If we had diabetes we would be on a watch and wait too. Except we would be given insulin pills or shots to manage the disease. I have friends with Diabetes and they seem worse off than I am with my cancers. They have had amputations and now confined to wheelchairs.

Live your life as nothing is wrong, Some people on watch, and wait never have an issue. Maybe you are that one person, who lives a lifetime with this disease, and never needs a treatment.

Dr's are not good at telling us this. They get so wrapped up in the disease they forget they are dealing with people and our emotions. They don't realize to a layman telling us we have cancer is beyond devastating. It really messes with our minds.

Now I did make a few changes No More Smoking on and off. I gave that up completely now, and I don't drink very often. Just once in a blue moon. My acid reflux has cured me of drinking. But I know others who still drink with NHL cancers.

Ok I have to run to a meeting this morning. But I will be back on later ...

The last few weeks I been beyond busy. Which I prefer to sitting around. 🙂

Jackie

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@travelgirl

@chuck218 I am now 3 yrs on a watch and wait routine. Through the course of these three years I have had all kinds of feelings and thoughts. And to make it even worse I was also diagnosed at the same time colon cancer. How do you survive double trouble, 2 cancers?

The word cancer itself is frightening.. I have always associated that when you get cancer your done with life. It is very difficult to cure this disease. Most people do not make it. That was what I believed or knew. Especially sitting on the internet reading. The information is outdated and god only knows what truth is. I had to stop reading everything I came across.

The day I was diagnosed with cancer time stopped. I put several things on hold to see how was this all going to pan out. Everyone I knew personally with cancer had passed away. I own my own business. I made a few calls in tears to see what it will take to close my company? I find it difficult to plan too far out. However I try and remind myself I feel fine. So Plan that trip..

I started doing things that I always dreamed of doing. Some crazy things and some not so crazy. I had to pull myself up from that couch and move. Go out and do things. Get off of the internet and only pop on once in while reading about the disease.

I can tell you what I have learned in three years of watch and wait. It means we are not dying anytime too soon. It just like having any other disease You now have to have a team of Dr's who check on you every few months. If we had diabetes we would be on a watch and wait too. Except we would be given insulin pills or shots to manage the disease. I have friends with Diabetes and they seem worse off than I am with my cancers. They have had amputations and now confined to wheelchairs.

Live your life as nothing is wrong, Some people on watch, and wait never have an issue. Maybe you are that one person, who lives a lifetime with this disease, and never needs a treatment.

Dr's are not good at telling us this. They get so wrapped up in the disease they forget they are dealing with people and our emotions. They don't realize to a layman telling us we have cancer is beyond devastating. It really messes with our minds.

Now I did make a few changes No More Smoking on and off. I gave that up completely now, and I don't drink very often. Just once in a blue moon. My acid reflux has cured me of drinking. But I know others who still drink with NHL cancers.

Ok I have to run to a meeting this morning. But I will be back on later ...

The last few weeks I been beyond busy. Which I prefer to sitting around. 🙂

Jackie

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Jackie. Thanks for sharing your story. 3 yrs on W&W is good to hear. I will pray you stay on it a lifetime. Your story is helpful to me. I just started W&W three months ago so it is all new to me. I try to look at it as another challenge in life.
Thanks again and best of luck

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Same with me. Diagnosed almost 2 years ago with NHL nodal marginal zone lymphoma. Bloodwork every 6 months and annual scans. Learning to live with it but is annoying. Many others are not so fortunate.

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@vcollins

Same with me. Diagnosed almost 2 years ago with NHL nodal marginal zone lymphoma. Bloodwork every 6 months and annual scans. Learning to live with it but is annoying. Many others are not so fortunate.

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21/2 years that’s good. I hope you have many more without a problem. Good luck

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I too was diagnosed with low grade follicular non Hodgkin lymphoma over 3 years ago November 2015 and was found by a fluke .I have 5 lessons mostly in my abdomen and 2 are quite large almost 5” but I am told they are slow growing low grade. Since my diagnostic I have had 6 PetScans and each one shows a growth of 1/4” but I am told that is slow growing. I have not had any treatment and am on the watch and wait since I have nosystems. My last PetScan showed no growth and it’s the first time in 3 years. My metibolic heat is lower than it’s been in 3 years too. My Oncologist says it could reverse. I am keeping my prayers going and fingers crossed. Has anyone else heard of this happening?
Scooter McKim

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